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Therapeutic Play Dates

Everybody needs a support system to make parenting an experience you can survive.  The necessity for support grows astronomically when your child isn’t neuro-typical.  Several months ago Seamus and I were going to Tumble class at the local YMCA when we happened to meet life changing friends.  Lindsay and Ethan have been perfect companion for Seamus and I.  We’re all in the exact same boat.  The really cool part about this is that the boys have all, yes, ALL of the same therapists!  It’s actually uncanny if you think about it.  We live in a very small community.  Our kids have birthdays that are only twenty days apart.  They really are peas and carrots.  Destined to be buddies.  I gained my Autism soul sister.  Lindsay has helped me understand and accept that it is completely okay to be different and that our boys are really something special.  I never dreamed that this would become our reality and she has been there for me every step of the way!  Thank you, Lindsay for being there for me to vent, complain, and cry a little.

So, therapeutic play dates.   You know those days when you wake up before the sun has even considered rising, your toddler has demanded two sippy cups of milk, four pouches of mini muffins, and a foot rub all before their father rolls out of bed.  Those are the days that you need to spend some time with your friends and remember that these really are the good days.  These are the days that you go hang out and drink coffee while the kids run laps in the basement.  Maybe you load up and make a trip to the beach, playground, or an amusement park.  These are the days that you make amazing memories with the people you really care about.  It helps to balance out the bad days so they really don’t seem that terrible.

 

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Groundhog Day

I think most people have seen the film Groundhog Day with Bill Murray.  If you haven’t, a large part of the film he is waking up every day and doing the exact same thing every day.  He’s stuck.  Autism can be similar in that ritual and routine are vital to making the day go smoothly.  Stepping outside of the routine requires a good deal of mental preparation for both Seamus and I.  So, lets talk about a day in Seamus’ world.

It’s early in the morning.  Most of the time the sun hasn’t even had a chance to rise before his little feet hit the carpet.  Seamus is a little ninja and will go downstairs unattended.  At least he used to.  We started balancing toys on his lever style door handle so when he opens his bedroom door toys clatter onto the floor and wake us up.  He sneaks into our bedroom hippos tucked under his arm and he unplugs his charged kindle tablet.  We can’t figure out why but he calls it home.  He then collects either Jeremy or I and we head downstairs.  He lands on the couch and wants the kindle turned on.  He likes to watch educational videos with colors and shapes.  Sometimes he watched videos about Lightning McQueen from the Cars movie.  This is followed by breakfast-milk and muffins, a walk-usually downtown or to a coffee shop, play time, lunch, play time, dinner, brushing teeth-always at 6:15pm, bath-always at 6:30pm, and his lengthy bedtime ritual.  Seamus isn’t capable of being put in bed while he is still awake.  He’s a sensory seeker.  He will do everything in his power to stay on his two feet until he falls over.  Unfortunately for us that means the more exhausted the faster he moves and the riskier the activities become.  So typically before we reach this point we turn off the lights in the living room.  Get him his hippos and blankey.  Jeremy usually gets him on his lap and holds him in place.  As soon as he starts falling asleep he fights to get away.  He’s exhausted but he can’t miss anything that could happen around him.  Some nights this process is pretty quick and only takes about twenty minutes.  There are days that it takes well over an hour to get him to finally drift off.  Carrying him up to bed makes you feel like you’re holding nitroglycerin during an earthquake.  The slightest wrong move and you’re back downstairs starting the process all over again only now he’s angry and the fifteen minutes of rest just made it so he can be awake for another three hours.

Every day is almost entirely the same.  Change is stressful and overwhelming to the point that if we go out and do things that are out of the ordinary he often doesn’t go to sleep until hours after his usual bedtime.  Home is his safe zone.  His bubble.  I’m thankful that he is comfortable and happy here, but I would love for him to explore more of the world.  Perhaps in time it will get easier.

 

I have no idea why he has such a tough guy look on his face. 

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Some Cool Firsts!

Seamus had two cool new experiences this weekend. One was really showing some skill on his tricycle and managing to pedal by himself. 



The other cool new experience was touching a frog!  He’s tried this before but never really enjoyed it. My favorite part was when when the frog peed all over Jeremy’s hands. Seriously though, it was thrilling to see him touch something different and out of his comfort zone!


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Alone Time

Today was an exceptional day. Not because anything extraordinary happened either. What was so great?  I got three whole hours to do whatever I wanted.  That’s one hundred eighty minutes. Ten thousand eight hundred seconds. It was glorious. 

How did I spend this elusive quiet time?  For starters I ran back to Walmart. I forgot to buy kitty litter when we were there yesterday. I got caught in line behind a little old lady that had 47 gift cards that each had a balance ranging from fifty cents to nothing on them. I drove the convertible with the top down and let my hair blow in the wind and let the sun dance on my skin. I put on my bikini and laid in the yard with an ice cold bottle of Ellicotville Brewing CO’s Blueberry Wheat Ale while listening to a Pandora radio station from the year I graduated high school. I did a few chores while singing my heart out because no one was home to hear how good/bad I am at singing. Sat down and caught up on some Greys Anatomy. Nothing I did was outstanding, but I feel like a human again. 

We all need a chance to regroup on occasion. It makes you a better parent, partner, friend, or any other roles you may fill. A little self care goes a long way. That goes for everyone!

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Russian Roulette

No, I’m not talking about the version with angry gangsters and you owing them A LOT of money for illegal gambling on cage fights in the basement of a local night club. 

This version is worse. This kind of Russian Roulette involves sleep. Every night when I crawl into bed around 10:30 pm I can’t help but wonder “will I get three hours of sleep or seven?”

For the last couple of months Seamus has had no sleep schedule. There is no rhyme or reason as to when he gets up at night. It doesn’t matter if he napped that day or what he ate. His diet is extremely limited because he has a lot of oral aversions. Last night was a prime example of a hell night. He was wide awake at 12:38am. Time to party. Let’s go do something!  Some nights he wants to get into bed with us an we let him if that means getting a few more hours of decent rest. Last night that wasn’t the case. Last night Jeremy offered to take the bullet. He got up with little man and they were downstairs the rest of the night. This sleep cycle is exhausting me. I hope it’s temporary and we can roll out of it soon. If your kids sleep through the night do something a little extra special for them today because they earned it. 
Now I’m off to go buy an extra large coffee with a hit of espresso to help keep my eyes open for a few more hours. 

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Toddler Translator

So, I’m sure most parents struggle to know what their child is trying to say when they first start becoming verbal. They struggle with how to pronounce different sounds. They aren’t quite sure how to shape their mouth, younger and lips. So you often find yourself wondering “what does he mean?!” I’m sure most of you know I’m a stay at home parent. My little man is almost always with me. I’ve become the master toddler translator. Jeremy will get home from work and start playing with his best friend. A word or short phrase comes out of Seamus’ mouth and I receive a panicked glance from Jeremy. “What did he say?”  

Bobo= Hippo

Taw Tow= Paw Patrol

Some of his language took a lot of consideration to figure out what he mean. Some words come out as clear as if you or I spoke them. I suppose it’s all about what is important. Things like milk, cookie, want help, please, and thank you are all clear as day. He’s also mastered the art of yelling MAAAAMMMM as soon as I try to go to the bathroom or wash the dishes. 
I guess where I was going with this was that language is freaking hard. Seamus hoes to speech therapy once a week. Occasionally he will be seen twice. He hates it. It’s hard. She expects him to work and he knows it. Today we failed to have the patience for speech therapy and decided playing with cars and mashing some play doh into grandmas carpet (sorry!) was more important than working with Christine. As much as I want him to talk we are planning on bringing sign language back in for him. The neurologist even suggested something like a chart on the fridge with pictures of things he may need or want that he can show us. Anything to break the communication barrier in our home right now would be helpful. I’m sure it’s frustrated being in his mind. So much happening in there and he can’t tell us what is going on. Hopefully soon this starts to change. 

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Rice and Beans. 

They aren’t just for eating. 

Have you ever felt so overwhelmed by emotion or sensations that your chest tightens, your heart races, your skin crawls,  and you can’t help but scream just to let it all out?  Well, that is an every day experience for my son. 

Some of the simplest things can cause him to be overwhelmed and have a tantrum. It could be that his kindles battery died. He didn’t get the snack he wanted. He wanted to hide behind his rocking chair all day and we have places to go. It could be the dreaded changing of shoes and socks. 

So when we find ourselves in a situation where he becomes inconsolable he has a sensory box. I often call it the calm down box. There is a long tote under my bed that has fifty pounds if white rice in it. He also has small toys and trinkets hidden throughout the box that he can investigate and play with. Some of his trinkets include a funnel, a cereal bowl, a comb, bouncy balls, a belt buckle, small plastic animals and a bunch of other little knock knacks. When life gets hard we pull out the Calm Down Box. He usually fights getting in it. I think he knows it makes him feel better and he doesn’t always WANT to feel better. After he is in he will sit and play for a long time. On occasion he will even lay down in there and just be still. 

Seamus also goes to Sensory Integration twice a week. This service is one that seems slower to make progress but it’s definitely there. They are helping him to get his senses to work together and they help him tolerate transitions from one activity to another. One of his biggest sensory struggles is having things touch his feet. Like how after you mow the lawn and you run around barefoot the tiny blades harmlessly stick to your feet and of course turn them green. As soon as Seamus notices this he runs to the hose box and has to clean it off with the cold water. He doesn’t leave it there for long. He will run back and rinse his feet every couple of minutes while he is outside. SI has helped him adjust and learn that the grass isn’t stuck to his legs forever. They have helped him learn the skills to clean off what you don’t want on you. Just like that. A reduction in tantrums. Sometimes he still gets too overwhelmed to help himself but he is adapting some and becoming more tolerant to it. 

Buddies playing in a bean box together.

Autism, Parenting

Life Before A Diagnosis

My son is two.  He is vibrant, happy, and busy.  Very, Very, excruciatingly busy.  He doesn’t like to fall asleep.  He might miss something exciting.  The more exhausted he gets the faster he moves until he can literally fall asleep standing up.  He is very easily frustrated, but I think a lot of that comes from the language delay.  When he gets angry he can’t get any words to come out at all.  He just screams, cries,throws himself on the ground, or charges into walls or doors.  When he is happy he can light up a room and warm your heart.  Unfortunately his mood can turn on a dime with transitions that are simple for other kids to make.  Taking his shoes and socks off is stressful.  Telling him we have to go somewhere is stressful.  Being in public is stressful.  For the love of God do not touch his hippos without an invitation to do so.

 

Our families version of normal has been anything but normal for the last six months.  This whole process started about six months ago.  Seamus marched into his two year check up appointment with our family doctor.  The usual process of checking height, weight, and the plopped us in an exam room while we waited to be seen.  The nurse set a piece of paper on the counter and asked me to fill it in.  Nothing scary.  Just the usual “Is your child hitting these mile stones” kind of form.  We had done many before today so nothing about this was odd.  His doctor stepped in the room and scanned over the paper. “Is he still not saying anything?”  “No, not yet.  He makes a lot of different sounds, but no real words yet.”

That is when we were first referred to Early Intervention.

A few weeks later he had an evaluation and was found to have delays in communication and social interactions.  So, we started therapy with Christine. Christine is absolutely amazing at what she does.  Seamus is a VERY busy boy and she was able to work with him and get him to start talking.  She did find it troubling that she couldn’t get him to sit down and engage with her.  He had to be moving, jumping, spinning, or hiding in the couch cushions.  She suggested we contact our family doctor and request a referral for Occupational Therapy down at Rehab Works.  The can help little people with Sensory Integration.  The wait to get into these services is lengthy.  Seamus got a call pretty quickly for an evaluation, but we waited almost two months to be offered regularly scheduled appointments with them.  The ladies down at SI quickly recognized Seamus as a sensory seeker.  He just CANNOT get enough movement.  There is no fear in this child.  We’ll come back to this, but he sees them twice a week for therapy down at the hospital.  After a couple months of combining Speech Therapy and Sensory Integration we started to see some small improvements.  Seamus was adding new words to his vocabulary regularly, but something still seemed off about the way he interacts with others.  This is when we got the dreaded suggestion to make the trip to Erie and meet Dr. Joseph Barber and have an Autism Evaluation done.  I about fell over when scheduling the appointment in early March and the absolute soonest they could see us was the end of June.  Almost three months of wondering “what is going on?”, “Why is he so different?” but we waited.

The day came for his Autism Evaluation and I found myself in denial that anything could possibly be anything but ok with my kid.  I mean he’s two!  He should be a bit on the crazy side!  They all are! We talked some on the trip to Erie but I was lost in my own head.  We arrived and I filled out the mountain of paperwork and health history for Seamus starting with my pregnancy. The diagnosis came pretty quickly after a conversation with the doctor and some interaction (or lack of interaction) between Seamus and Dr. Barber.

He has Autism.

He is different.

 

We will be okay.

It’s not a death sentence so there is no reason to feel sorry for us or him.  The world is just a little bit different through his eyes.

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